Hello! So I've only recently just joined the site because I guess I'm struggling a little and would like some advice. I am planning on going to support group for young people with Lupus soon, but I guess I can't wait...
So I was diagnosed back when I was 14 (I'm 20 now) and I've never really spoken about it unless it comes up in conversation for some reason. No one needs to know so I don't mention it. However, I recently got my first payed job (only on week 2!) and already I feel like I'm struggling. And I don't know whether it's just me or my Lupus. (I've always suffered the worst with sleep and fatigue, followed by joint pain.)
I work 39 hours a week and I find it really hard to get to sleep, so when I do an early shift (5-2) I'm absolutely shattered as I barely got, say, 4 hours of sleep. The job I'm supposed to be doing is also quite physically demanding, having to stand around all day and be energetic and such, and I can feel my joints protesting but I don't know what else to do other than keep going.
I also feel like I can't talk to the store managers, and because I'm so new I kinda feel like I don't have a right to say anything. I'm not sure what to do and I don't really want to lose my first job because of my health.
So yeah, I guess I'm just wanting to vent and also get some kind of advice on how to best deal with this...
Thanks in advance!
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Sceddy
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Welcome to the site! It would be great to meet you at one of the meetings for young people with lupus, so please do come along
I'm judging from what you have said in your post that your employers are not currently aware of your lupus and have therefore not made any adaptations to help you manage better in your role? You may wish to consider talking to them because many companies are very supportive and I wouldn't like for you to struggle on until you can no longer manage. If you'd like more information about working with lupus, we have a couple of guides that are really helpful. You can read and download them at lupusuk.org.uk/working-with... or if you'd like physical copies I can send some in the post. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
Have you spoken with your consultant about how you are currently managing in your job? Do they have any advice? Do they think that your lupus is currently being controlled as well as possible or are they still looking for the best treatment regimen to suit you?
If you would like any tips on managing fatigue, sleeping better and pain management, we have a couple of blog articles here which you may find helpful;
Thank you! I'm planning on going to the group this coming Sunday, as I've never been to one and I think/hope it'll help me in some way.
And I believe that they're aware of it, in that I mentioned it on the health form thing they get you to fill out, but otherwise nothing else has been said and nor has it been mentioned. And I'll definitely look to possibly download the guides.
The last time I spoke to my consultant was about a month or so ago. I'm not due to see her until October/November time I believe. So she is currently unaware of my job, however I have always been told by my consultants that I should be able to do any job and lead a completely normal life; even if I personally do not agree with that statement. And my medications hasn't changed since I was first diagnosed, save for coming off the steroids years ago and recently being put on vitamin D tablets. (I'm on Azathioprine and Hydroxychloroquine otherwise).
That would be great. I'll look forward to meeting you on Sunday if you make it along. I'll have a few copies of the employment guides with me too Lots of people at the group are in a similar position to you or have similar experiences, so it may be helpful to chat with them.
Whilst your employers may be aware that you have lupus, they may not know much about the condition and how it could affect you. It may be helpful to have an occupational health assessment to see what support/adjustments they could offer you to help.
Whilst your consultant says that you should be able to do any job normally, at the end of the day you will know your body (and what it is and isn't capable of) better. If you feel like you are struggling it is important not to continue to push too hard because you don't want to risk triggering a flare. It may be that over time your body will get used to the work and the extra activity you are doing, but you may need to gradually get there.
Incidentally, Paul_Howard , I think the LupusUK guide on working with lupus is very good, but it seems odd that it does not mention trade unions at all. It manages to include Vocational Rehabilitation Counsellors (which I have never come across in all my years etc!), yet even the section on "what do I do if my employer treats me unfairly?" doesn't mention TUs. Considering the major role TUs have in advising and representing members in the workplace - at disciplinaries, in disputes etc, isn't this a major oversight?
Thanks for your feedback whisperit . Quite frankly, yes, not including information about trade unions was an oversight. I have made a note for this to be added when the guides are next reviewed
No problem. We're always looking to improve our information booklets/leaflets so are very grateful when people contribute their expertise and opinions.
If you join a trade union, you will get free legal advice and representation on all sorts of employment issues, including what rights you have in the workplace - and they are unequivocally on your side, rather than being part of the company that is employing you.
If you are working in a shop, the most relevant TU might be USDAW usdaw.org.uk/ Part-time workers pay £1.49 a week membership.
Over my long life (!), I've had some disappointing experiences with my local TU branches, but some others have been amazing - very well informed, willing to put a huge amount of time into fighting my case, a real ally. More accessible and better informed than the CAB too. I think a lot of people don't join because they think, "Oh, that won't ever happen to me - I'd rather save the £1.50". But it's like insurance - you never know when bad stuff might happen. X
Yes so very true. I am a trade union steward and we can really help at times when people feel at their most vulnerable. I work for a local authority and it's quite incredible how some people are treated. The absence management policy is shocking! I have given my employer a copy of the guide, referred myself to employee healthcare for reasonable adjustments and asked for a workplace assessment to be carried out regularly.
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